Amyotrophic Lateral Sclerosis (ALS) and Related Resources

Amyotrophic lateral sclerosis (ALS; also known as Lou Gehrig’s disease) is an incurable disease related to the nerve cells (neurons) responsible for controlling voluntary muscles (muscle action we are able to control). ALS is part of a group of disorders known as motor neuron diseases, and characterized by the gradual degeneration of motor neurons. It’s understandably a very hard disease to cope with. Here are some helpful resources.

The ALS Association Texas Chapter “focuses primarily on helping local patients and families live with ALS.” This Texas Chapter is part of the wider ALS Association, a national not-for-profit health organization dedicated to research, patient and community services, public education, and advocacy.

ALS From Both Sides is a website by a nurse specialist in neuroscience who also has ALS. This site provides very helpful, practical information.

ALSUntangled helps patients with ALS review alternative and off-label ALS treatments. Published and active reviews can be found on this website.

Amy and pALS provides communication and computer access solutions to people with speech and motor challenges (such as ALS) and helps patients, caregivers, and professionals share information about many dimensions of living with ALS.

The National ALS Registry is a registry for people in the U.S. with ALS. It is the only population-based registry in the U.S. collecting information to help scientists learn more about who gets ALS and its causes. As this site observes, “If you have the disease, consider joining the Registry and completing the brief risk-factor surveys because your answers could help scientists defeat ALS.”

The Texas Technology Access Program works with agencies that provide assistive technology device loans and is developing a system of mutual referral so patients can find the agency most appropriate to meet their equipment loan needs.